Don’t be alarmed– but be aware, my fellow Parkinson’s disease travelers!
As if we didn’t have enough to worry about along our journey, it was released recently, that the Transportation & Security Administration (TSA) has a program called “Quiet Skies” that is noting behavior, looking for excessive fidgeting, perspiration, and cold stares by passengers. Supposedly, fifty passengers a day are identified.
We are being tracked and monitored both on the ground and in the air. Our habits, reading material, and reactions are noted and logged, if we bring any kind of attention to ourselves. The knowledge that anything out of the ordinary needs investigation is understandable, but when you are faced with a neurological disorder that can alter your walking, uncontrollable movement and body temperature regulation (both hot and cold), tremor, or balance issues- these physiological reactions are possibly red flags that could bring focus on those of us living with an illness.
Maybe, just maybe, through education and identifying ourselves as people with Parkinson’s and educating TSA agents about facial masking, dyskinesia, bradykinesia, as well as the numerous subtleties that can come with Parkinson’s, might be just what the doctor ordered. Instead of making the TSA wonder what we are going through, we need to create a teachable moment that might just lead to real changes.
People suspect and often fear what they don’t know about. Unless you live with Parkinson’s disease daily and are aware of the wide variety of symptoms and unpredictability of this illness, only through education and extra training will those unfamiliar with neurological disorders come to be educated.
Dyskinesia is the uncontrollable jerky movement of hands, feet, or head. Often misunderstood, dyskinesia is a side effect of the Parkinson’s disease medication. Sometimes, this side effect is embarrassing, annoying, and at times even dangerous. Besides drawing attention to you from complete body writhing, dyskinesia can be exhausting. When I experienced 1 to 2 hour episodes of dyskinesia, I would feel like I ran a marathon without ever leaving home. Small spaces, sharp edges, and anything glass or breakable was a potential hazard. Trying to hold a drink with dyskinesia is a struggle, as your hand wants to splatter everything in sight but your mind screams, “Don’t do it!”
Tremor and dyskinesia are different. Unlike tremor, dyskinesia is bigger than a rapid twitch or tremble. At times, my entire body wiggled and flailed. It still happens, but only on an infrequent basis. Dyskinesia interferes with delicate and precise movements as well as simple everyday tasks, like making a sandwich, pouring a drink, or slicing bread. Someone with dyskinesia may struggle to brush their teeth, comb their hair, or just perform normal acts of daily living. Constant care and awareness is heightened to avoid food from flying everywhere.
People who don’t know me that well, who may see a brief shake, may laughingly call it a “dance”. Calling dyskinesia a dance may be meant to lighten the severity and discomfort of the event for all involved. Dancing is by choice—dyskinesia is not. I tolerate this comment but admittedly wish that those calling dyskinesia a dance could refrain from reducing a drug interaction that affects so many, to a recreational act. Dyskinesia in public is a teachable moment! Explaining to the uninitiated that this isn’t part of the illness of Parkinson’s has been a constant challenge.
Understanding dyskinesia from the non-scientific perspective isn’t that complicated, but trying to negotiate it, reduce it, and calm it, is the hard part. Never knowing when or where it might crop up can keep you on edge. It adds more stress—not what you need! Over time, I have gotten better about finding some control with the help of meditation, yoga, breathing, and reiki.
I realize that the distinction between tremor and dyskinesia probably in the scheme of things isn’t all that crucial, but what is important is the way either symptom is accepted by the public. Educating the public and demystifying the nuances of Parkinson’s can bridge the gap and clarify just what the public should understand about symptoms and side effects related to Parkinson’s disease.
Parkinson’s disease has given me many gifts, lessons, and opportunities. I am forever thankful for the amazing people that I have met and developed friendships with over the past 20+ years. There are far too many of you for me to thank and acknowledge at this time, but I would like to point out an important person who works quietly for change in the Parkinson’s community and expects no praise for her tireless commitment.
Linda Swanson, of McKinney, Texas, is a force that I encountered 5 years ago. Her infectious spirit and ebullient energy is something she brings wherever she goes, and oh, she just happens to have Parkinson’s disease. A marathoner, a half marathoner, a constant volunteer, Linda is always raising awareness about Parkinson’s disease. Linda and her husband, Mike, are tireless advocates and volunteers for Parkinson’s charities. Please take a moment to learn about Linda’s story in the video, Changing the Face of Parkinson’s, which was submitted to 2015 Neuro Film Festival. Please support Linda by viewing and voting for her video titled Changing the Face of Parkinson’s (registration is required to vote).
The Swansons are two people, who along with many of you fill me up with hope and inspiration!
If you read this blog with any frequency, you know that I don’t make a habit of promoting or talking about celebrities. Today is a new day and find it odd and out of character, but I am compelled to react to the insensitive, callous, outlandish, and mean spirited use of language making news in the past week. I don’t mean the Paula Dean incident.
I would dare say that Kanye West’s over the top simile in comparing a shaking Benz to Parkinson’s disease shows real ignorance, a tremendous lack of compassion and understanding about the illness, and displays an obvious disregard in caring about being informed on what living with Parkinson’s disease means.
Parkinson’s disease isn’t the punch line to a joke! I am reminded of a phrase my parents used to say that I advise Mr. West and the rest of the world who want publicity: There is nothing cute about being stupid. I would even modify that statement to be, there is nothing cute about being insensitive.
Mr. West is an extremely successful, wealthy, popular, black entertainer, with the attention and influence on millions of fans. Rather than use his platform in front of the world for something positive and beneficial, he chose to alienate the ill and compare them a sputtering vehicle. I for one consider this degrading insulting and just plain wrong on so many levels.
Much ado has been made in the media about Kanye West and Kim Kardashian’s new baby daughter, North. Instead of talking about his music, her career, and the baby, maybe something should be said about the disconnect of humanity that many of these performers have for someone unlike themselves. Is this insensitive mentality a trait to pass on to his daughter? Obviously, Kanye didn’t get the memo concerning a kinder gentler world.
I can only hope that Kanye sees the error of his ways and uses better judgment and more informed choices in the future. He has a responsibility to his child do to what is right. That’s what I think–what do you think?